Caveats

Pardon my long absence. I’ve had an eventful—and at times grueling—few months. But I’m finding my way back to writing, and hope to post more regularly here.

If there’s a theme to my news it’s this: I’ve gotten a lot of good news, but good news with caveats.

I’ll talk about my other news (like a more involved knee surgery than I thought I’d signed up for and medication side effects) in future posts, but let’s start today with my sarcoidosis. In December, I went to Ohio to meet with my sarcoidosis guru to assess the impact Acthar is having on my systemic disease. Acthar is the new treatment I was able to start on last May after the National Organization for Rare Diseases (NORD) was generous enough to enroll me in their patient assistance program after my insurance company denied coverage for this very old but newly very expensive drug. I was desperate when I began the twice weekly home injections of Acthar, stuck as I then was on an unsustainable regimen of toxic drugs that seemed barely to control my sarcoidosis—two monthly chemotherapy infusions (Cytoxan and Rituxan), one chemotherapy pill (CellCept), and prednisone. And during the past seven years, I had “failed” an even longer list of equally toxic drugs that did even less to stop the disease’s victory march through my body than the ones I was on. Acthar felt like my last hope.

I went to Ohio bearing films of whole body PET scans done before I started Acthar and six months after the drug had a chance to begin working. The comparison, according to my guru, was “astounding.” Acthar diminished the active sarcoidosis in my body by 50 percent. I need to repeat that because the news still takes my breath away. In six months, Acthar did what a host of immunosuppressants, chemotherapies, TNF inhibitors, biologics, and corticosteroids could not. It not only stopped the sarcoidosis from progressing, but beat it back. This is great news in itself, but it also means I can stop both Cytoxan and Rituxan. I can look forward to fewer nasty chemo side effects, and hopefully more energy as I quit these toxic brews.

There is, however, a caveat. As much as Acthar is demonstrably working to fight my sarcoidosis, I am not feeling much better. I continue to struggle with almost daily migraine-level headaches, along with frequent bouts of vertigo that are so intense I can’t get out of bed. I’m still exhausted every day, even after sometimes sleeping fourteen hours a night. The left side of my face is still numb, and my left leg is so numb that after my recent knee surgery, I gave myself second degree ice burns without feeling a thing.

“What is going on?” I asked the sarcoidosis guru. “Why don’t the encouraging test results mean that I feel better?” It turns out that the disease has damaged—probably permanently—the delicate cranial nerves that are responsible for my pain, vertigo, and vision problems. My chronic fatigue and various areas of numbness are also caused by nerve damage. There is no current treatment for peripheral neuropathy.

If I plotted my emotions during my hour visit with the guru and in the weeks since then the result would look a lot like a sine curve. My hopes rise, dip, rise, and dip again, and I end up pretty much back where I began. My inner dialogue goes something like this:

“I’m so much better! Acthar is actually working”
“But my head is throbbing and my world is literally tilting.”
“I get to stop Cytoxan and Rituxan! That will help me feel better, maybe a little less tired.”
“Who cares? I have permanent nerve damage and there’s no hope for improvement.”
“But I’m so much better. Acthar is actually working.”
(Repeat. Ad infinitum.)

It’s exhausting to be on a rollercoaster of emotions. In turns, I am elated, deflated, hopeful, and gloomy. I push myself to appreciate the truly good news I received. I catch myself wallowing in the caveat. When I inject myself twice a week with Acthar, half of the time the syringe feels like it contains a golden elixir of hope itself. “This will cure me,” I think. But the next time I’ve got to plunge a needle into the muscles of my thigh, it only hurts and makes my hands shake. What does it even mean to be cured if the damage the disease wrought means I’ll always keep feeling so lousy?

I’d like to report that I’ve found a way out of the oscillations of my personal sine curve. But it’s an emotional equation I can’t solve. I keep wrestling with this paradox: I am better, and yet I am not; I am being healed, but in a way it doesn’t seem to matter. It’s possible that sarcoidosis has broken me to the point that eradicating the disease won’t fix me.

Without a solution, what do I do? For now, I am falling back on the single most important lesson I’ve gleaned from my eleven years in Chronic Town: run away from big concepts like cures or permanent damage and reside instead in each moment. I’m trying not to give up on hope, but just scale it back. I’m seeking refuge in daily life— in my son and my husband. I cannot solve a conundrum. But I think I can live within it.